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Dementia’s journey

Old Flopsy

Registered User
Sep 12, 2019
211
0
Hi @Dutchman -it is so lovely to read of your chat with your counsellor that has enabled you to try a new approach to the seemingly endless anguish you feel. I really hope that it helps.

The trepidation prior to a visit is pretty awful- I feel it every time I drive towards the home as I go over and over in my mind what I may find- when I really should be concentrating on the road.

Perhaps that in essence is the new approach- looking at tomorrow but no further. I will be thinking about you tomorrow Peter.
 

Dutchman

Registered User
May 26, 2017
1,127
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73
Devon
Thanks @Old Flopsy . Thinking of you too. We live the visit 3 times I feel. Expectations, visit and then going over it again when we’re alone. The light at the end of my tunnel never gets any bigger☹️
 

None the Wiser

Registered User
Feb 3, 2020
213
0
@Pusskins you say “It has finally occurred to me that past behaviours of MH were very likely to be caused by dementia which I wasn't aware he was getting at the time.”
I have had a similar thought over unresolved issues with my husband. I now wish that I’d done things very differently, and had more time for him. The trouble is that hindsight isn’t helpful when you’re left with a situation where there can never be a resolution, or apology. The time has passed.
@Dutchman - good luck with your STOP strategy. It’s worth a try. Let us know if looking at the bigger picture helps. I can understand the reasoning, but it’s hard when you‘re dealing with the very few moments that you have together..
 

Dutchman

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May 26, 2017
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Yes absolutely @None the Wiser. As I said I’ll try anything but not at the expense of losing those special tiny moments that mean so much.

I’m agonising over something and I wonder if others feel the same. I placed Bridget in the care home with no agreement from her side and I made this decision on my own faced with the uncontrollable dementia behaviour and off she went under the illusion that she was being taken to her parents, well it’s almost like I have a duty to visit to make amends.
These feelings are made worse due to Bridget seemingly being sadly resigned to her fate. It’s in her manner and remaining personality, a sad acceptance of how and where she is. And this haunts me because I feel she saying “ you put me here and you deserve to feel bad”. God, I’m so screwed up about all this.
Peter
 

Pusskins

Registered User
Jun 6, 2020
248
0
New Zealand
Yes absolutely @None the Wiser. As I said I’ll try anything but not at the expense of losing those special tiny moments that mean so much.

I’m agonising over something and I wonder if others feel the same. I placed Bridget in the care home with no agreement from her side and I made this decision on my own faced with the uncontrollable dementia behaviour and off she went under the illusion that she was being taken to her parents, well it’s almost like I have a duty to visit to make amends.
These feelings are made worse due to Bridget seemingly being sadly resigned to her fate. It’s in her manner and remaining personality, a sad acceptance of how and where she is. And this haunts me because I feel she saying “ you put me here and you deserve to feel bad”. God, I’m so screwed up about all this.
Peter
@Dutchman I doubt Bridget thinks that at all, Peter. She won't be that aware, so stop punishing yourself. In sympathy, all I can say is that this situation is hell on earth for all of us, and punish myself I do everyday. If only I could go back 10 years, start again and do things differently. Am not sure at this stage if I can ever forgive myself for past mistakes. Unfortunately it makes me feel pretty miserable so I understand how you feel. I think possibly we need lots of people around us at times like this, to distract us, but I have none which doesn't help at all. xx
 

Dutchman

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May 26, 2017
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I suppose it’s the guilt of it all. Placing her into a small room away from the lovely home that I alone now live in the best I can.

But what choice did I have? She was desperately trying to escape and I was completely on my own with the “shall I shan’t I “ dilemma of her being taken away. But the guilt remains. I still feel that when the time came for me to be stronger I was weak. And I feel that I’m now paying the price.
 

Stacey sue

Registered User
Jan 24, 2020
103
0
I feel the same, the guilt is overwhelming, if only we could turn back time. I have a problem of none acceptance,I keep going back to how he was? He is still there in body, What an awful disease this is. I have never felt this alone and mixed up before.
 

kindred

Registered User
Apr 8, 2018
2,642
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I feel the same, the guilt is overwhelming, if only we could turn back time. I have a problem of none acceptance,I keep going back to how he was? He is still there in body, What an awful disease this is. I have never felt this alone and mixed up before.
It is, it is dreadful. I would not go back to the years I was caring for my husband alone at home, I would not want them back. I am surprised I am still alive.
I am so sorry. Kindredx
 

Dutchman

Registered User
May 26, 2017
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Hello @Pusskins. You have us, you certainly have me. I know we’re no substitute for that physical presence but we’re only a click away and we know absolutely how each other are feeling better than all the doctors and well meaning friends.

Here’s an example of crass language that just comes out when talking together - I take a friend of mine to the home as company and he sits in the car while I go inside to see Bridget. When I return he turns to me and says “ you know what, I wouldn’t want to end up in a place like this”. I mean, here’s someone who I thought would have a bit more understanding of my feelings. Others just do not “get it”.
Peterx
 

kindred

Registered User
Apr 8, 2018
2,642
0
Hello @Pusskins. You have us, you certainly have me. I know we’re no substitute for that physical presence but we’re only a click away and we know absolutely how each other are feeling better than all the doctors and well meaning friends.

Here’s an example of crass language that just comes out when talking together - I take a friend of mine to the home as company and he sits in the car while I go inside to see Bridget. When I return he turns to me and says “ you know what, I wouldn’t want to end up in a place like this”. I mean, here’s someone who I thought would have a bit more understanding of my feelings. Others just do not “get it”.
Peterx
Dear God, Peter, how tactless can folk be!!! I am so sorry. Comments like that just increase our stress and feelings of remorse. Kindredx
 

Andy54

Registered User
Sep 24, 2020
21
0
I think a lot of people who have not had any personal experience of our situation just think of dementia as someone being forgetful and vague - if only that were true and we didn't have to go through the endless emotional torture that we are experiencing.
 

Dutchman

Registered User
May 26, 2017
1,127
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73
Devon
I’m off soon to see Bridget for my second visit inside. It’s 09.30 now and I’ll be there for 11.00, have the Covid test and then go inside for 11.30. I’m not looking forward to it at all and I know it’ll be upsetting but I believe I owe it to Bridget to go and be with her. Here comes that guilt again!

I need distraction later but I don’t know what will work. If I walk I’ll be going over the visit, if I stay indoors I’ll be suffering memories. I know she won’t remember me visiting. Probably forget the moment I’m gone. I’ll probably come back on to the Forum again to unload

Thanks @kindred for your quick reply. Peterx
 

Stacey sue

Registered User
Jan 24, 2020
103
0
We all have that guilt,I go for my husband, they say in the home he walks all the time when I am not there, who knows? If it makes a difference, I find it very draining,but Imust go!!
 

Dutchman

Registered User
May 26, 2017
1,127
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73
Devon
Nearly going in!! I’ve just talked to a couple of residents who are outside enjoying the sun. It’s good to get from them their information on how Bridget is during the day. A little goes a long way.

Bridget’s looking at me through the window and I’m saying “I’m coming in soon” and she looks at me and then walks off. Keep strong Peter, keep strong
 

Dutchman

Registered User
May 26, 2017
1,127
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73
Devon
Bridget walks all the time, never sits still. Rather that than sitting too long I suppose.

I’ll be back on the Forum later just to get it out there. I’m ashamed to say that when Lockdown hit I was sort of relieved that inside visits stopped. I was overwhelmed sometimes when I went inside by all the home business and Bridget’s behaviour and the almost obligation to remain for at least an hour.
Now I can go in again the feelings come back
 

Dutchman

Registered User
May 26, 2017
1,127
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73
Devon
So I’m now back home. The visit was ok’ish in that I spoke to her of my regrets, said sorry, babbled on about our holidays, our children, asked if she could tell me what she’s thinking. Of course this all meant nothing to her and she just kept looking at me blankly. In the end we went back downstairs and I said I’ll see you later.

no doubt I’ll go over and over this all day today and cry for my lost love and what she means to me. My one hope is that in months to come things might be easier🙏
 

Pusskins

Registered User
Jun 6, 2020
248
0
New Zealand
Hello @Pusskins. You have us, you certainly have me. I know we’re no substitute for that physical presence but we’re only a click away and we know absolutely how each other are feeling better than all the doctors and well meaning friends.

Here’s an example of crass language that just comes out when talking together - I take a friend of mine to the home as company and he sits in the car while I go inside to see Bridget. When I return he turns to me and says “ you know what, I wouldn’t want to end up in a place like this”. I mean, here’s someone who I thought would have a bit more understanding of my feelings. Others just do not “get it”.
Peterx
Certainly not tactful. xx
 

None the Wiser

Registered User
Feb 3, 2020
213
0
The visiting is so ‘odd’ isn’t it? I both look forward to it, and really dread it. I worry about what I’ll say, and how my husband will be and respond. When I come away I feel no sense of comfort or relief. It always seems to leave me feeling unsettled., and unhappy. This isn’t because he doesn’t know me ( he doesn’t), or is unhappy (he seems settled and happy). I think it must be because it’s so odd to be leading such separate lives, and that he is unable to show any interest in mine, and I can only guess at his. I’m a stranger to him, and just appear from time to time. Today he said he was pleased to see me, but didn’t really want to stay ’talking’ with me. It’s odd!
 

Dutchman

Registered User
May 26, 2017
1,127
0
73
Devon
Hello and good morning @Stacey sue and @None the Wiser .
I have very mixed feelings after my second inside visit. We sat in her room together on the edge of the bed and just sat. I had to ask her to look at me otherwise she just looks into the distance.
Now I have the chance to talk to her, just her and me, I’m really tempted to vent my upset that’s been building up. I know she won’t understand but to be able to say, “ it’s just me now, I’m so lonely, why did you leave me, you’re ok here, I’m all alone in our house now” and all those feelings we have all the time.

But of course I don’t and what good would it do? But a part of me is angry and jealous because she’s seemingly content and I’m struggling with hurt 24/7. My poor poor Bridget, what a waste of her final years.

What would be ideal, and we can never have, is someone like us, someone who understands, to be with us when we have our misery moments. Gone are the close families of relatives just round the corner who would pop round to comfort and even share the role we carry alone. I’m not sure if the “good old days “ for all their faults weren’t better in some ways.
Peterx
 

Andy54

Registered User
Sep 24, 2020
21
0
One of the hardest things is not knowing what our loved ones are feeling or thinking. We can't share our feelings or thoughts with them in the way we used to. I reached retirement age last year (D is still "working age") and all of the things I had been looking forward to share with her in the future are now gone. D of course is unaware of the loss of our relationship and future. We gave up a lot of our personal ambitions earlier in our life to care for our son who has a learning disability, we were just at a point where we could start being a little more self indulgent when dementia started robbing us of our future. I feel so sad for all of her lost potential.
 

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